‘This is not how the story is going to end.'”
I’ve been avoiding writing about this but I guess it’s time.
I’m not even sure where to begin. I’ve really been putting this off. So, let’s see.
2 Wednesday’s ago I went to lunch with my mom and some of her co-workers. While we were there I mentioned how my eyes get stuck. I don’t even remember the context, but I said something about my roommate making fun of me for it. One of my mom’s coworkers then said “that actually sounds like seizures.” I explained to her that it’s happened for years and it’s no big deal. I left and didn’t give her a second thought until my mom used WebMD to tell me that in fact it does sound like what I describe is a type of seizure. After a slew of argumentative emails she made me a doctor’s appointment with a promise to pay the copay since I saw the appointment as pointless. You can imagine my surprise when my doctor told me that actually, it did sound like seizures.
Well, ok then.
She referred to a neurologist on that coming Monday so he could run further testing. When I met with him my dad came with me and he told us that what I was experiencing didn’t sound like seizures it just sounded like sleep deprivation and stress. So you’re telling me, what I’ve been experiencing every single day for the past 4 years is because I’m severely stressed and sleep deprived….every day? I mean, I didn’t argue because he was probably right. That’s what I’d been claiming all along anyways.
He ordered for me to do a 24 hour EEG just to be sure and so after wearing that god forsaken hat I returned to his office Tuesday to have it removed. He told me that he would call me Thursday, assuming everything was fine, and then I could go back to my life and get more sleep and have less stress.
His office called me Wednesday asking me to come back in asap.
This isn’t our first rodeo, we all know that in the medical world, no news is good news, early news is not.
My dad took me back to my neurologist where he showed us the results of my EEG. Apparently not only was I having seizures, I was having seizures in multiple parts of my brain, nearly constantly throughout the day. So, now we had to go through an MRI and MRA to check for any growths, aneurisms, or tumors that might be causing these seizures.
During my MRA I had an allergic reaction to the contrast so I got to stay in the office and watch my technician edit the images. While I was watching him I noticed he had highlighted an area and put “Left Anterior?!?!?!!!!!” He didn’t label any other parts that way….immediately I had a feeling. Really, I had a feeling the whole time that this was something more. I don’t know why, or even if I’m right because still at this point I’ve yet to be diagnosed, but I guess I could just tell this would be a long road.
Thursday after those tests I accepted death. Not because I had been confirmed that I had a life threatening situation on my hands, but because at this point, after being through after all I’ve been through with my health, and feeling this overwhelming inability to ever experience being healthy I just realized that death was no longer an abstract idea to me. Death is a reality. I know now that I’m going to die. We all are. But that’s not a distant idea that I can ignore, it’s something I’ve come face to face with several times and one day I won’t walk away from that encounter.
On Friday a new wind blew in. I decided that while yes I’m going to actively accept the reality of death, I’m not ready to go yet. And I am going to fight like hell against whatever this is.
Later on Friday they called me back to let me know my scans were clean and they were transferring me to an epileptologist.
The wave of relief I felt was unparalleled. My brain was ok. No matter what this was or is, my brain is going to be ok. I was so, so grateful.
I had my first appointment with my epileptologist Wednesday and she told me more than I expected to hear.
She told me that based off how my seizures are showing up, and the timeline of when they started, they actually think I may have a neurological disease that was caused by my cancer. It’s possible that my body formed antibodies in response to my tumor, and those antibodies are now attacking my brain. All of this research is relatively new so we still have a lot to test before getting a diagnosis. So that’s all I know at this point. I’m doing much much better today than I was yesterday and Thursday. Wednesday and Thursday I experienced a lot of self pity and also anger at myself for having such a selfish feeling. I finally feel like myself again, and I finally feel ready to take on whatever this is. I am actually filled with an inexplicable joy. This is my story. And I wouldn’t trade it for anything.